Still Running: A decade living with Multiple Sclerosis

10 years after my first MS symptoms I will run my first marathon. Without the advancements made in the treatment of MS, and the support of my loving husband, my family and friends, I might not have been able to keep running. The wonderful work of the National MS Society has helped millions of people like me and is funding research for a cure for MS. Help me reach my goal of raising $5,000 for the National MS Society by donating to my fund 10 years, 26.2 miles

The idea for this blog, and my goal of raising $5,000 for the National MS Society, were conceived during a 20 mile training run for my first marathon. Here I will simultaneously chronicle my experience living with MS for the past decade and my marathon training progress.Help me reach my goal!

Sunday, October 28, 2012

October 29th, 2012: Yesterday, Steve and I participated in a 5K benefit run for MS. Being close to Halloween, there were many people in costume wandering around. Before the race started I noticed a girl in 80's style workout gear who looked strikingly like the younger sister of a friend and cross-country teammate from high school. Maybe that primed me to be thinking of my first races, long before I had any clue that MS would someday affect my mobility, but as the race began the course was like a flashback. It started on paved road, but quickly veered off onto grassy and sometimes muddy fields. As it looped around one field and the onto the next, I was reminded of many fall 5K races with the Saranac Lake cross country team.*cue flashback sound effects*

Sometime during the summer of 1994:My brother, Luke, had been running cross country for 2 years and was enjoying the sport. He also saw that while the boys team was small, the girls team was miniscule. There were only 2 girls on the team, not even close the the minimum of 5 needed to compete as a team. He knew that I am completely uncoordinated and had no chance of succeeding in most sports, but he thought I could probably run. My parents had measured out distances on our road and with Luke pushing me, I ran a mile with him. His encouraging words convinced me that I should give cross country a try, so I joined the team as a modified runner. Another friend, whose brother ran on the varsity team, decided to join and we started training with the team in August.

Fall 1995: Perhaps word got out about the talented (and rather cute) boys team, maybe it was the beginning of a running boom, but the next year 4 more girls joined the team. Partway into the season, along with several other girls, I switched from running modified (1.5 mile races) to competing at the varsity level. Finally we had a girls team that could actually compete! There were exactly 7 of us, just barely a full team! By some miracle, we made it to the state meet that year along with the boys team. We didn't stand a chance at doing well at that level of competition, but it was amazing watching the boys team win the State Championship!

Fall 1999: By my last year of cross country, the team had grown quite large. The talent pool was deep and, while I was no longer a scoring member during most meets, I enjoyed training and competing with such a large group of like-minded runners. The comaraderie of the team was one of the few things I would miss about high school.

Some of the members of our team have gone on to do great things athletically. Quite a few have competed professionally in various sports, and some have represented the USA in the Olympics (even bringing home the Gold in one case). While I have neither the talent nor the ambition to achieve that level of athleticism, training with such supportive people and high caliber athletes taught me a few things that I have carried with me:

1: Never give up. There are bound to be setbacks and disappointments in life. Learn from them, pick yourself up and keep going.

2: A positive attitude is an invaluable tool. Always focus on the positive, the silver lining to bad situations. By not dwelling on the negative, you are free to enjoy life to the fullest extent possible.

3:Stick together. Surround yourself with positive people who will be there for you when you are at your worst. Be there for them and they will be there for you.

October 29th, 2012: It turns out that the girl was, in fact, the younger sister of my old friend and teammate. After the race we reminisced about the old cross country course (she had joined the team the year after I graduated), and our coaches. Here we both were, many years later, both still running. I hope, 10 years from now, I'll still be running.

Monday, October 15, 2012

5:00 a.m. The temperature outside is 32 degrees, the first frost of the season. The synchronized alarms beep in our bedroom and the guest room where my parents lay sleeping. We all stumble out of bed and begin the process of getting dressed and ready for race day. Oatmeal is made, coffee is brewed, and bagels are toasted. Steve and Dad deliberate over how many layers of clothing will be needed to comfortably ride bikes on the course. Gloves and hats are dug out of storage, bikes are loaded on the bike rack. By 6:15 a.m. everyone is dressed and, coffee mugs in hand, we pile into the frost-covered car.

6:45a.m. Our quick and uneventful drive to Hartford suddenly grinds to a halt. Somehow none of us thought to consider race traffic delays when planning our timeline for the morning. According to our GPS it is taking us about 5 minutes to go 1 tenth of a mile. Mom and I still need to check our bag, Steve and Dad are supposed to arrive to pick up their volunteer gear and instructions by 7. At this rate there is no way they can make it. At 7:15 we were close enough for Mom and I to walk to the bag check, so we hop out of the car and walk past the long line of vehicles filled with runners.

7:30 a.m. We check our bags and begin winding through the crowd looking for the port-a-potties when suddenly I can't see Mom anywhere. How did we get separated so quickly? This was not how today was supposed to go! I'm searching the crowd (it feels like Where's Waldo, the marathon edition: Where's Lisa) and climbing up onto a statue I catch sight of her red jacket (so glad she didn't check that!). She sees me and we proceed, arm in arm to the port-a-potties.

8:00 a.m. Mom and I, having managed to stay together and find our pace group, decide it's the perfect time to get our first picture of the day together. Mom has the camera strapped around her waist and she takes it out. She's about to ask someone to take our picture when she realizes that we never put the batteries in! So much for documenting the race, we'll just have to rely on the official race photographers. We are standing and chatting when the crowd starts moving forward. With so many runners, we can't hear the announcement or gun, but the race has begun. Suddenly, I am overcome with emotion and begin to cry and hug Mom as the runners stream around us on all sides. In that moment, all I can think of is how in my worst moments 10 years ago I had envisioned myself in a wheelchair, and here I am on the verge of running my first marathon with my Mom by my side. 6 minutes after the official start, we finally cross the start.

10:00 a.m. We are about 12 miles into the marathon, almost halfway! Our pace has held pretty steady around 10 minutes miles, better than our goal. The cold fall day with clear blue skies is the perfect condition for running. The weather and our own excitement of running the marathon together spurs us on and, mile after mile, we hang on to our pace. We are in good spirits and are already plotting how to make the NYC Marathon even better. Those rainbow animal print knee socks that runner is wearing might just do the trick. Ooh, that foam shark hat! It would be hard to lose each other if we wore that! We definitely need to remember the camera batteries for NYC so we can document it as we go. Dad bikes by and now that we're warmed up (he's still freezing on his bike) Mom hands off her jacket and the camera (no sense in carrying it with no batteries). He gives us some GU and pedals ahead. Shortly after we pass Steve. He's off his bike and I'm worried that he is hurt. No, just cold, he tells us as he is pacing and doing jumping jacks to warm up.

Steve and my Dad biked the course as part of the volunteer support crew

11:00 a.m. About 18 miles in and I'm still feeling pretty good. The aches are there in my feet, but I can easily work through them. Mom is fading a bit and I hang back a couple times to help her continue. We are still hanging onto our pace, but it's proving to be a bit more difficult now.

12:00 p.m. Mom has gotten her second wind and now it's my turn to fade. 23 miles in and I am hurting. Anytime the incline changes slightly my left knee gives a sharp pang and feels as if it might give out. The panic caused by this and the sheer exhaustion I'm feeling right now put me over the edge and I start to have trouble breathing. It's a flashback to my days of running cross country with exercise induced asthma in high school. Sucking air and sounding like a train whistle with each breath, Mom convinces me to walk a little bit. She gives me her shoulder to lean on and with her support I slowly lose the limp and begin to breathe easier. Over the next 2 miles I have a couple more episodes, but the thought of the finish line being less than a 5K away keeps me going.

Almost to the finish line!

12:24 p.m. As we pass the 25 mile mark, Mom reminds me of the very first mile we ran together. I was in middle school and running cross country. Mom had never been a runner, but wanted to try. I remember her struggling up a hill with less than half a mile to go. I was breathing easily and running backwards giving words of encouragement. Here we are now, running the last mile of our marathon together. My first, her forty-fifth. This memory spurs me on and we both find the strength to give that last mile everything we have.12:34 p.m. Holding hands and grinning from ear to ear, we cross the finish line. Official time of 4:28:00. 10 years ago she was typing my papers and helping me walk as I struggled with my first MS symptoms, now we stand together having just completed a marathon. After a long embrace we walk, still grinning uncontrollably, to collect our medals and get food, massages and beer! After we have recovered a little bit, Mom reminds me that this was just our last long run before the New York City Marathon. Not sure yet if I want to keep running marathons, but for now I'm so grateful that my body was cooperative and so excited to run in New York on November 4th!

Friday, October 12, 2012

This is it. As I write this post, 24 hours from the start of my first marathon, I am overwhelmed with thankfulness for all the support and love that has surrounded me in the past 10 years.

My brother

I am grateful for my family. For my parents who gave me the skills to become a strong, independent person. With their guidance and continued support I have been able to thrive in the face of disability. For my brother, without whose encouragement I might never have started running. For my grandparents, aunts, uncles and cousins who have always freely offered their love and support.

My family

My friends

I am thankful for my friends who have been there to hold me up (literally, at times). Being able to share my struggles and turn frustration to laughter has provided me with strength and, I believe, has helped me heal.

Grateful doesn't even begin to describe my feelings when I think of Steve, who has been here, by my side, throughout this whole journey. Our first date was just weeks before my first attack of MS. He was there for that first visit to the ER. Months later he patiently listened while I explained through tears that I probably had MS and what that might mean. He has ridden many miles to raise money for the National MS Society. He has helped me eat, walk, and inject myself with my medicine. Despite all of the complications that MS has thrown into our relationship, he has stood by me and provided strength, encouragement and humor whenever I have needed it.

The love of my life

The uncertainty of what an MS diagnosis may mean, and the sometimes sudden appearance of disability that can often be invisible to others, can take a toll, both physically and emotionally. I have been extremely blessed to have such an incredible network of people supporting me every step of the way, but not everyone is so lucky. Knowing how difficult I have found living with MS to be at times, I can only imagine what a struggle it must be for those who don't have the same level of support. It is not surprising to me that many people with MS suffer from depression. Thanks to the incredible people I have in my life, I am able to wake up each morning and face a new day with joy and determination to make the most what life has to offer me.

Thank you for reading my story. I will continue to write about my journey as I prepare for my next challenge: The New York City Marathon!

*All pictures were taken by the amazing Rae Barnes and her husband Chris. They donated their skills and did an incredible job photographing our wedding. Thanks to them we have beautiful documentation of our wedding day!

Wednesday, September 26, 2012

I don't sleep the night before the
first day of school. Ever. It started my first year
teaching. A combination of excitement and anxiety keeps my mind
spinning and me tossing and turning all night. When that alarm starts
beeping, I bounce out of bed and get ready in record time, energized by the
adrenaline coursing through my body. Now that I'm into my 8th year teaching,
the adrenaline rush of the first day quickly wears off and my morning slows
down considerably.

But that first year was rough.
Almost everyday was like the first day. Up at 5 am, to work by 6:30 am,
home by 6:30 pm if I was lucky. Often I'd get up at 4 am and start
working because I couldn't sleep. With a caseload of 35 kids in two schools,
ages 8-17, and disabilities ranging from mild to severe, I was stressed to the
max. For once in my life I was glad that both of my parents are
therapists. Through talking with them I was able to develop some habits
that minimized the sleepless nights and helped me get through that first
year.

By the time school had started, the loss of vision I
experienced over the summer had vastly improved, allowing me to drive the 40
minutes to work each day.However,
the stress I was experiencing triggered another attack.Fortunately for me, this one was not as
disabling.Numbness wrapped around
my torso, leaving a sensation similar to wearing a tight band around my chest.Patches of numbness appeared on my
legs.One leg began to drag
slightly behind the other, making it difficult for me to walk.It was impossible to run.

At 23, I was clueless about how insurance worked.I knew I had it, but I had never used
my own policy.Now I was across
the country, without a primary care physician or a neurologist, and I needed
help.I called the MS Clinic in
Rochester, but because of my policy and distance, they were unable to prescribe
anything.I couldn’t wait to get
an appointment with a primary care physician, a referral to a neurologist, and
finally an appointment with a neurologist to obtain the prednisone I knew I
needed.Plus, it was the
weekend.I couldn’t wait.I had work on Monday!So it was off to the emergency room.

After seeing several doctors, very briefly, they approved
the IV of prednisone and started the 3-day course immediately.Initially, I was thrilled.I had managed to obtain the treatment I
needed (on my own, how grown up!), and after the first couple of days I was
already noticing improvement in my mobility.Then the first bill arrived.And another.Followed by several more.

I had no idea that each of the doctors that said so much as
“hi” to me would be sending me a bill for hundreds of dollars.In the end the tab was over
$4,000.I broke down.How would I manage to pay this?I had no savings and was barely
managing living expenses and paying off student loans.I called the billing office in tears
and the kind woman on the other end told me to stop by and figure out a payment
plan.They helped me figure out a
manageable amount that I could pay each month.It was rough for a while trying to figure out how to live on
such a limited budget, but as Calvin's dad would say, it builds character.

Tuesday, September 11, 2012

In the Fall of 2004, I started grad school at SUNY
Geneseo.Steve was my main reason
for continuing at Geneseo, as he still had 1 more year and I wanted to stay
close to him.During the day I
worked for the Arc as a life skills assistant in home for people with
disabilities and in the evenings I took classes toward my Masters degree.

I have always been patient, and my
experience struggling to make my body do things I needed it to do gave me a
deeper understanding of the frustration that faced the people I was helping at the Arc residences. One of the guys with cerebral palsy, "Bob"*, would get angry if he fell. If you asked if he was hurt, he would respond, "just my pride". I understood where he was coming from. As he got older, the spasticity in his muscles became worse and his mobility became more and more limited. I could understand his frustration and we bonded. He used to joke with Steve (who also worked in the Arc houses) that he was going to take me on a date.

While my own disability strengthened my compassion, an important distinction between Bob's experience and my own was that while his CP became progressively more debilitating, I am lucky enough to have the relapsing remitting form of MS. This means that while I have times where my MS makes it difficult to perform basic living tasks, the symptoms usually improve and can even disappear completely with time. Yes, I have some irritating symptoms that just never go away, but, fortunately, my most debilitating symptoms haven't stuck around. A little numbness? A twitch? I can deal with those!

Luckily for me, the next academic year didn't bring any new symptoms. I was able to enjoy months straight without MS rearing it's ugly head. At first I was constantly doing a mental body scan, checking to make sure nothing had changed, but as time went on I was able to relax and just enjoy my last year as a student.

Ch-ch-ch-ch-changes-Spring 2005

All our worldly possessions. It's a miracle the car made it!

By the end of the Spring semester, Steve and I had decided to move to Oregon together. He would begin a PhD program in Psychology and I would try to land my first teaching job. For someone who had never really envisioned leaving New York State, it was a big step. I was scared, both about moving to a state I had never visited (and didn't even pronounce correctly) and about starting my teaching career. One thing I was sure of though, I needed to go with Steve. He was, is, and will always be my home. We packed the car (yep, just a little Hyundai Elantra) with our worldly possessions and drove the 3,000 miles to Eugene, Oregon.

After 2 weeks of peanut butter and jelly, we arrived on the West Coast. Within the next 7 days we found a place to live and I got my first teaching job. The next month was a whirlwind of cheaply furnishing our apartment, hosting family and friends and discovering the beauty and quirkiness that is Eugene, Oregon.

Blinded by the light-Summer 2005

A large circle of my visual field was missing.

When the month was over, I flew back to Geneseo to finish my masters program. I moved into an apartment for the month, began my practicum (teaching reading to students in a summer program), and sold my car as fast as I could. Once the car was sold, I was getting my exercise walking everywhere. It was on one of these walks that I noticed something strange. Coming towards me on the street was a bicycle with no rider. Strange. I turned my head to get a better look and suddenly a rider appeared. Was this magic in Geneseo? Sadly no, there wasn't any Hogwart's style wizardry going on. I was losing part of my vision.

I was stranded, with no car, unable to get to my neurologist in Rochester, but perhaps that was for the best. If I still had my car, I might have been tempted to drive to the hospital, putting myself and others in danger. Instead I called the MS Clinic and was told that I needed to at least go to an ophthalmologist to rule out the possibility that an eye disease was causing my symptoms. Fortunately, there was an ophthalmologist in Geneseo who was able to see me right away. After a couple of tests, I could see from the results that I was missing a large part of the vision in my left eye and a small part in my right. The doctor quickly determined that it was due to my MS. After another call to the clinic, I was able to arrange for a nurse to come to my apartment to give administer an IV of prednisone.

While I waited for the prednisone to work it's magic, I continued to struggle with my vision. Here I was, supposed to be teaching struggling readers to read and I couldn't even read a page. I think I pulled it off, but I must have looked pretty ridiculous the way I was maneuvering my head and closing one eye, then the other, in an effort to read to the students. I managed to make it through the rest of my time at the reading clinic without the kids noticing my strange behavior.

As soon as the reading clinic ended, I flew back to Steve. Luckily, by the time I arrived back in Oregon my vision was almost completely restored. I was able to safely drive again, and so I began the 40 minute daily commute to my first teaching job.

Thursday, August 30, 2012

I've always enjoyed playing "what if" games. When Steve and I first started dating we often played this in the car, I guess was a good "getting to know you" game of hypotheticals. One "what if" scenario I find interesting is thinking about if certain personal or historical events had never occurred. What if I had grown up in a city, how would my life be different? What if I hadn't decided to go to SUNY Geneseo (my first evaluation was that it smelled like cow manure)? On a larger scale, what would the world be like if Hitler didn't exist? You get the idea.

The "what if" that struck me recently was: What if my grandmother didn't have Multiple Sclerosis? One answer could be, maybe I wouldn't have it, since there seems to be a genetic component to the disease. Ironically though, the answer for me was that I wouldn't exist. Without this disease that crippled my grandmother, and later myself, my parents most likely wouldn't have ever met. Allow me to explain.

Tokyo-1946

Before marriage, children, and Multiple Sclerosis, Anita Bear was a singer. She served with the US Army in Tokyo, Japan as a Civilian Actress Technician, entertaining the troops through her radio show. She loved Japan and as a young woman exploring the world for the first time I'm sure she was having the time of her life. The people she worked with must have been a close group of friends and I can imagine the laughter and music that filled their young lives. The announcer for her show, Edward McDonald, later became her husband, and the pianist who accompanied her, Johnny Baker, was a close friend.

When they returned to the United States, Anita and Edward married and started their family. He continued to work in radio, and later in early television and she worked hard to raise their 3 children. Over the years they lost touch with the people they had served with in Japan.

Some much needed help- 1968

Anita McDonald (Bear) was in a tough spot. She was struggling to manage her MS and take care of her 3 children, now nearly all teenagers, without the help of her husband, who had left several years before. Unable to cook, clean, or care for herself in many ways, her daughter had taken on these duties at a very young age. The family was struggling to get by.

Out of the blue, Johnny Baker contacted Anita and came to visit. While she was too proud to ask him for help, he saw how his old friend was struggling. When he returned home to New Jersey, he asked his church for help. They contacted the First Presbyterian Church of Northport, NY, where Anita was living.

A Deacon in the church, Emma Meissner, came with the pastor to visit Anita and see what kind of help they could provide her and her family. Emma and Anita instantly became good friends, talking on the phone each night. Emma and her husband, Claus, opened their hearts and home to Anita's family. Soon the Meissner and McDonald children were friends and the families gathered together for birthdays, holidays and other occasions.

Emma and Claus decided that Anita and her family really needed a better home, one equipped to fit Anita's wheelchair. in 1969 they bought the McDonalds a house and had it renovated to accommodate Anita's needs. As you would expect, they had a ramp built and made sure doorways and hallways were wide enough, but they went beyond and had her bathroom built to match the one she was accustomed to using. Having a place to call home was a blessing for Anita and her family, but having the friendship and unwavering support of Emma and Claus meant the world to them.

A Love Story-1978

Now it just so happens that Anita's daughter, Lisa, and the Meissner's eldest son, Klaus, were close in age. When they first met there were some teenage butterflies, but as their families grew closer, their relationship developed into a good friendship. After graduating from high school, they went to college and graduate school, staying in touch and of course seeing each other at family gatherings.

When Lisa had begun working and Klaus was completing his graduate work at SUNY Albany, she would often come to visit him. During one of these visits, Klaus decided that he really wanted Lisa to become more than just a friend. He wanted a relationship. She pushed him away. It was just too complicated. They were practically family!

She left to drive home, but her car had other ideas. Shortly into the trip it broke down, leaving her stranded. She found a payphone and called Klaus for help. It was that gallant rescue that changed her mind and she agreed to try a relationship with him.

Having had plenty of time (10 years) to get to know one another, they quickly moved in together and in May of 1979 they were married. In the First Presbyterian Church of Northport, NY.

In 1980 my brother, Luke, was born and I followed 22 months later. 20 years after that I was diagnosed with Multiple Sclerosis. But would I be here without it?

Tuesday, August 21, 2012

Dragon Naturally Speaking

With Dad and Mom at graduation

After such a rocky junior year of undergrad, I was apprehensive about my senior year. Would my symptoms come back? How bad would they be? In preparation for the worst, my parents bought my a speech recognition program (I think my mom was haunted by the memory of being stuck in a room with me for 5 days writing term papers), and a new computer that could support the software.

I spent hours training the software to recognize my voice. Anyone who has ever dealt with an airline or other company that requires you to speak to a computer before you can talk to a real person (if you can ever talk to a real person) knows that it can be a frustrating experience. In 2003, this "top of the line" software was not much different. It misunderstood me regularly. I had to learn to enunciate carefully and learn the commands for punctuation. Editing was a nightmare. Still, there were humorous moments, speaking my friend's names or ridiculous sentences into the program and seeing what it came up with.

Celebrating my 22nd birthday in style

Fortunately, I never had to use the software. I made it through senior year with very few symptoms. Of course I had the residual changes in hot and cold sensitivity and some numbness, but nothing that affected my ability to type or get around. The only new symptom that I developed was a twitch. Whenever I relaxed, my body would jump a little. Sometimes just my shoulders, sometimes it was my entire body. It was a little distracting, but since I was never relaxed in class or at my student teaching placements, it never caused me any embarrassment or difficulty.

The original crew from Jones Hall

Graduation

In May, I sat (in the freezing rain) with my friends of the past 4 years and listened to Senator Schumer give his commencement address. They had helped me through the toughest moments of the past 2 years. Without their support, I don't know if I could have made it to graduation. It was hard knowing that we would not be living so close together, but we promised to keep in touch and visit frequently.

That summer, for the first time, I didn't go back home. I stayed in Geneseo and lived with my boyfriend, Steve. Even thought it was only a for couple of months, it was big step for me, and for us, but it felt right. Even then I knew that I wanted to be with Steve for the rest of my life.

When summer ended, I moved in with a girl who I had lived with the previous year and began my masters program. At that point, my MS had been relatively dormant for almost a year. Thankfully, it remained dormant even through some stressful and emotional times that following year. My next attack didn't occur until the summer of 2005.